Inspired by a Community of Caregivers
While every situation is
unique, one thing is clear,
family caregivers do whatever
they need to do to make
sure their loved one has the
support they need. For many,
this means providing care
24 hours a day, seven days a
week.
This past August, the
Connecting the Dots for
Caregivers project team had
the privilege of meeting with
251 family caregivers and
healthcare providers to better
understand their experiences
and identify opportunities
to work together to make
improvements to the caregiver
experience.
This is what we learned:
2F
amily caregivers do
not see themselves as
caregivers. They are a
son, daughter, spouse or
1 CONNECTING THE DOTS

friend. They are doing what
needs to be done. They are
honoured to support their
loved one, but they are
overwhelmed. They find it
very difficult to ask for help
and they are having trouble
coping.
2T
he role of the family
caregiver is 24 hours,
seven days a week. Family
caregivers spend a lot of
time and experience a
great deal of frustration
navigating a complicated
healthcare system. In
addition to taking care
of their loved one’s
personal needs, family
caregivers describe their
role as advocate and care
navigator.
2B
oth family caregivers
and healthcare providers
would like to improve

communication. Family
caregivers don’t always
know who they should
speak to. At the same time,
healthcare providers often
don’t know who the family
caregiver is. Both are looking
for that point of contact.
2F
amily caregivers would
like to see more effective
information sharing
between healthcare
providers and with family
caregivers. At every
stage, caregivers want
to understand what is
happening and what they
should expect. They want
tools to help them navigate
the system. Healthcare
providers recognize that
they don’t always have
the information related
to available supports and
resources to share with the
family caregiver.
NEWSLETTER ISSUE 2. NOVEMBER 2017

2F
amily caregivers are
overwhelmed with
information and have a
difficult time processing
and understanding. Often
times, they don’t ask
questions because they
don’t know what to ask,
and they don’t discuss
their concerns about
their role as the family
caregiver because they
don’t want to create more
stress for their loved one.

In addition to these themes,
family caregivers shared
feedback on some of the
system issues that create
unnecessary stress and
anxiety. While some of these
issues fall outside the scope
of this project, The Change
Foundation is committed to
creating greater awareness
of these issues at a
provincial level.

2 Family caregivers want
to be asked how they are
doing, how they are coping
and what they need.

•C
hallenges of navigating
a complicated healthcare
system
•C
onsistency, reliability,
and training of personal
support workers
•R
espite and the need
for greater flexibility,
specifically in rural areas
•T
he need for affordable
and reliable transportation,
specifically in rural areas

2H
ealthcare providers
believe they need
more training on how
to interact with family
caregivers, how to
present options and
encourage them to
accept help.

These themes include:

“The caregiver often needs more support than patients There needs to be better
communication amongst the entire circle of care and we need to speak their
language” – Healthcare Provider

Who we spoke to

121 family caregivers and
130 healthcare providers,
including 28 physicians
60% answered never, rarely or
sometimes when asked ‘Do you feel
there is good communication about
your family member’s/friend’s care
between doctors, nurses and other
health care providers, and yourself?’
60.9% answered never, rarely or
sometimes when asked ‘Do you
have the support you need to
manage any anxieties, fears or
worries you have?’
52.3% answered never, rarely or
sometimes when asked ‘Does your
health care provider (doctor, nurse
or other health care provider) ask
you what you need to care for your
family member/friend?’

Improving the Caregiver Experience
As we move into Phase 2
– Co-Designing Solutions
with Family Caregivers and
Healthcare Providers, we will
be focusing on three key areas
of work:
Awareness and
Recognition
Communication
and Information
Education, Training
and Supports

2 CONNECTING THE DOTS

Healthcare providers and
family caregivers will come
together as equal partners
to look at how to make
improvements in each of these
areas. As a first step, we will
look at the theme of awareness
and recognition. This will help
to ensure healthcare providers
better understand the
challenges of being a caregiver
and caregivers feel more
comfortable in identifying
themselves in the role.

This work will begin in the
family health team setting as
family physicians often have a
natural relationship with both
the patient and caregiver. With
support from all partnering
organizations, STAR Family
Health Team will play a key
role in helping to develop and
pilot tools that can later be
adopted by other health care
organizations.

NEWSLETTER ISSUE 2. NOVEMBER 2017

Sue’s
Story
As Sue reflects on her father’s
Alzheimer’s diagnosis and
the journey that followed, she
recalls the toll it took on her
whole family, but specifically
on her mother, Barb, who was
her dad’s primary caregiver.
“Alzheimer’s is a cruel disease.
It was so hard to watch him
deteriorate. Our health care
team made the difference”.
Tell me a bit about your dad,
Gerry.
My father was a wonderful
man, a kind and gentle giant.
He had a successful career as
a police officer and instructor
at the Ontario Police College,
and was a wonderful husband
and father to my brother, sister
and I. Five or six years before
he was officially diagnosed
with Alzheimer’s, we began to
notice things. He would forget
his words. We would chalk it
up to aging but we could see
it was getting worse. He would
hold an egg sandwich, and not
remember what it was, or what
to do with his breakfast.
What was the hardest part of
your journey?
There were nights when
my father would wander,
hallucinate and become
paranoid. He once woke up in
the middle of the night and
tried to get my mom out of
the house because he believed
people were coming to hurt
them. It was a complete
personality change. At that

3 CONNECTING THE DOTS

time, my mother was scared
and we needed to call 911 for
help.
What got you through those
difficult times?
A sense of humour helped.
We had to appreciate the
good times and inject humour
through the bad. Our team of
health care providers really
made the difference. Everyone
from the doctors, Alzheimer’s
Society, hospital staff, home
and community care workers
and those in the long-term
care home that dad eventually
moved to - everyone came
together to care for our entire
family.
My mom would get calls from
her different case workers.
They would check on her, give
her tips and answer questions.
They would also call me to
ask how my mother was. I
truly appreciated this because
asking a caregiver how they’re
doing doesn’t always give you
a true picture of the situation.
My mom would always answer
‘fine’, but she was 85 years old
at that time, and it was getting
more difficult to care for Dad.
In speaking to caregivers in
our community, we heard
how important it is to know
what’s happening and what to
expect? How important was
that for your family?
It’s critical. We were so
fortunate in many ways. We
felt a part of our dad’s care
team and information flowed
easily. It was scary to hear how
dad’s behavior might change
but knowing in advance made
it easier to cope. We knew

not to take dad’s behaviour or
words personally and knowing
what could happen allowed us
to create a plan so my mother
knew exactly what to do if my
dad’s behavior escalated. My
sister and I live an hour away
from my mom, having a plan
gave us peace of mind.
When you reflect on those
who cared for your dad, what
comes to mind?
Looking back, we didn’t realize
how difficult the journey would
be. My dad’s health care team
made us feel like we were the
team leaders and they were
there to help us through. The
emotional support we got was
so appreciated. They would
often ask how we were ALL
doing.
We would have never been
able to do it without their
support.
Sue Rausa is a member of the Connecting
the Dots Steering Committee. Sue hopes
sharing her story will help to improve the
caregiver experience.
Photo: Barb and Gerry in 2015 celebrating
their 67th wedding anniversary. Gerry
passed away a few short weeks later.

NEWSLETTER ISSUE 2. NOVEMBER 2017

About Connecting the
Dots for Caregivers
Connecting the Dots for Caregivers is a partnership between The Change Foundation and six
health care organizations in Huron Perth. Together, with family caregivers, we are looking at ways
to improve the caregiver experience by co-designing solutions, programs and resources that will
ensure family caregivers feel valued, respected, engaged and supported in their important role.
The three-year initiative includes four phases:

PROJECT PARTNERS
Family Caregivers in Huron Perth
Huron Perth Healthcare Alliance
Alzheimer Society of Perth County
North Perth Family Health Team
One Care Home and Community Support Services
South West Local Health Integration Network
STAR Family Health Team

Get Involved! We are looking for family caregivers to be part of future working groups.
If you would like to be part of this exciting project, please contact Jennifer Hubbard at
519.527.1650 ext. 4219 or Jennifer.hubbard@hpha.ca